As I explore a woman’s capabilities and values in decision making regarding pregnancy and testing, I sometimes uncover unexpected underlying motivations for the genetics consultation. One area that intrigues me and is not often discussed (if at all) in the literature is the desire for what is typically deemed a “poor” outcome.

I believe it is integral for the prenatal genetic counselor to understand the circumstances surrounding a conception – was this a desired pregnancy? Did it take a long time to conceive? Is the patient ambivalent about the pregnancy? There are times when I have I realized a pregnancy was unplanned and the patient did not wish to continue the pregnancy, but did not feel comfortable with abortion or an adoption plan.

To such individuals, prenatal diagnostic procedures can be the beacon of hope, the ticket to diffusion of responsibility. If a miscarriage occurs as a result of the procedure, the patient can take comfort in the justification that she was testing to ensure the health of her pregnancy and that the miscarriage was beyond her control. If a diagnosis of a chromosomal issue is made, the patient can feel further justified in pursuing an abortion feeling she does not want to bring a child into the world who may experience undue suffering.

If a patient desires a procedure because she has a hope it will increase her odds for miscarriage or the diagnosis of an anomaly and thus, facilitate a more passive act than actively terminating a healthy pregnancy, do you feel the procedure becomes unjustified? In medical world where (gratefully) diagnostic procedures are offered to everyone and termination is available for any reason, I believe the answer is no. But it is a key moment in counseling to explore the meaning/implications of the pregnancy for the patient and the ramifications of both a healthy or atypical outcome after diagnostic testing.

The genetic counseling relationship must extend further in this case when a diagnosis of a healthy fetus with 46 chromosomes is made just as it would when a diagnosis of Trisomy 18 discovered. The genetic counselor must continue to engage in the decision making process regarding the pregnancy, and if she uncovers psychological defenses and processes that are too complex for the GC to work through, she must refer to a social worker/appropriate counselor. Remember, the quality of a decision is often a function of the decision process itself more than outcome. I think if a patient can look back on a decision and feel she spent a great deal of time considering her values, beliefs, and desires, she can feel more comfortable with her choice whether it be to continue, terminate, or make an adoption plan. We can not simply inform the patient the results are “normal” and move on.

We often think about prenatal diagnosis in terms of the quest for the perfect child, the reassurance of a healthy child, the ability to prepare for a child with special needs, and the availability of making decisions in favor of termination the face of a difficult diagnosis. Often prenatal diagnosis is tied to a desired pregnancy where there is parental desire to feel some degree of control over their and their child’s future. But what I am thinking about is in opposition to this, an undesired pregnancy where there is parental desire to have little control over the outcome, to be in a situation where the individual does not wish to bear the burden/responsibility of making a decision against continuing a pregnancy. We must also remember that this all may backfire on the patient if a miscarriage really does occur or if a prenatal diagnosis is actually made. The patient may then begin to feel a great deal of responsibility, remorse, guilt, and shame that was unexpected. You have to be prepared for this as well.

We all make decisions hundreds of times a day that we are not conscious of, not challenged by. Sometimes decisions about prenatal diagnosis appear to clear cut and our patients may even describe them in this way. But we must be astute enough to recognize when this is not the case and engage the patient enough to openly talk about her thoughts and help her anticipate the myriad of potential genetic and emotional outcomes. And we must be prepared to effectively make appropriate referrals when the patient’s psychological dynamics are too complex for our training to unravel and assist.

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The important and challenging task for the language interpreter is to find a balance between active and passive involvement, understanding what is happening while attempting to interpret, word for word, what is said.

Many interpreters accomplish this fairly well and I do not often believe they are actually influencing my patients in any particular direction for or against prenatal testing, terminations, cancer testing, etc. But, recently, an interpreter declined continuing because my French speaking patient from Africa and I were discussing abortion. The interpreter hung up, “exercising her right to decline continuing”.

After 30 minutes of rapport had been built, everything went into limbo for 10 minutes as I worked to find a new interpreter. I do not know exactly what the patient was thinking in those 10 minutes, but my thoughts went something like this…

“What kind of question did the patient ask that finally made the interpreter uncomfortable? Does my patient feel judged by this 3rd party who is probably sitting in her cozy ‘interpreter chair’?! I am angry! Don’t they screen for personal beliefs when they sign up people up for this service?! I am going to black list this interpreter from ob/gyn services…Wait, I have to focus on the patient’s reaction..”

I composed myself and apologized profusely to the patient. She was gracious and reiterated her question to our new interpreter. I heard, “Would the hospital be supportive of a decision to terminate a pregnancy with Down Syndrome?”

Clearly, the interpreter would not be.

But the interpreter is not actually a part of the hospital. That is known to me, but not necessarily to the patient. We spent some time clarifying the mixed signals the patient was receiving. The patient eventually decided to decline further prenatal screening. Did the interpreter influence her decision?

I could not survive my prodigiously diverse hospital setting without the aide of the language line. I have been suspicious that some interpreters are not translating word for word. I even hang up if I am uncomfortable with the interpreter’s style. However, this scenario forced me to further question whether or not the service actuallyinfluences the patient’s decision making.

A conference this weekend regarding medical decision-making published an abstract about this issue and the authors say:

“Common challenges were additions, omissions and modifications in terminology resulting in miscommunication of clinical and cultural concepts, and ethical concerns during conflicting values between providers, interpreters and patients.”

How do we overcome this? Can we? If we start using computers to translate for patients and providers, we would lose some of the essential humanness that great interpreters provide i.e. using a more compassionate voice when the room is full of tears, recognizing when a patient is lost and asking to rephrase.
As a genetic counselor, my primary goal is to facilitate informed decisions rooted in self-understanding. This often requires a non-directive and supportive environment. Anyone who assists us must have this goal as well. I implore interpretation providers to assess your beliefs before becoming involved in cases that might be morally offensive to you.

There is little worse than negative judgment when you are most vulnerable. Ask the patients. Ask yourself.